#66 The EndoWall Designer
Jaimee Rae is an activist based in Cardiff. She is painting her city to raise awareness of endometriosis. Follow her on twitter here and join the campaign here.
Endometriosis is a medical condition where tissue, like that of the lining in the womb, starts to grow elsewhere in the body. Charity Endometriosis UK estimates one in ten women "endure unrelenting pain" everyday as a result of the condition. The group Fair Treatment for the Women of Wales says that means around 150,000 women and girls in Wales have endometriosis.
Here’s what Jaimee has to to say…
What’s the biggest lesson you’ve learnt over the last year?
The lessons are endless but if I had to narrow it down to one, it would have to be REST! Resting allows you to hear what your body really needs. I hadn't realised that I was constantly on 100mph. Slowing down has allowed me to nurture my body and give it the love and understanding that it was missing. I think that I had always been so desperate to feel well, I was fighting my body and actually working against it. Now I know more, I am working with my body and feeling more control over my life. I've still got a long pathway to explore but my eyes have been opened. There are good and bad weeks. And that's ok! But if you rest on the bad weeks the good weeks will be even better.
What’s your burning question of the moment?
Why don’t we know more about endometriosis? Endometriosis is NOT a new condition. With 1 in 10 women suffering, that's approximately 176 MILLION women worldwide, it’s not rare. It is rare however in men. Not enough research is being done to understand what it is that we are putting into our bodies that is having such a drastic affect. We seem to continue in a cycle where we are sticking plasters over our problems and actually creating more long term problems. We need to understand the root of the problem.
It is not just Endometriosis that has become a big problem, but other conditions such as Adenomyosis, PCOS, Fibroids, Ovarian Cancer, Breast Cancer... the list goes on... what is it that is changing people's health? We desperately need to know more so that changes can be made to help better people's futures and save their fertility. Not everyone wants to have children but everyone should be able to have the choice.
What’s the most inspiring thing you’ve seen/ heard/ read in the last year?
Last March I met up with my EndoSister Emma Louise for the EndoMarch in Cardiff. She expressed that she was going to go privately to try IVF again, even though it had failed with the NHS. Emma and her fella have just in the last few days become parents of a beautiful baby girl...chemical free. Welcome to the world little one! You're parents have been dreaming of you.
This has given me strength, courage, knowledge and now faith that one day I will become a mother if I want to be. But when the time is right for me and my body, not just when it's suggested as an attempt to fix my Endometriosis. Endometriosis destroys so many women's fertility but I believe we can find new ways to help make a difference for women in the future.
What would be your one piece of advice to students out there?
Build bridges! It is not possible for one person to know, understand and appreciate everything. Build bridges between departments and subjects. For example I have a condition that is supposedly a gynaecological problem, but I also suffer with gastrointestinal problems. When I get my period, I’m sick. If I end up in the hospital I get flipped between departments because each department thinks that I am someone else’s problem. Oh, and use organic period products!
Endometriosis is not just a pelvic condition. It moves through your blood stream therefore moving anywhere in the body. Recently we lost an EndoSister because her lungs collapsed. Help me build better awareness and understanding among medical professionals when it comes to research, diagnosis, and treatment of endometriosis.
More information and links from the NHS here. Jaimee Rae is looking for new spaces to create EndoWalls in Wales and elsewhere - please get in touch if you can help!
You can read the rest of the profiles here. If you’d like to nominate someone or yourself to be part of this interview series please tweet me @redjotter. I encourage people who identify as women and people of colour to nominate themselves and I’d love to feature people who aren’t based in London.
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